Suddenly one day, she was overcome by a sense of systemic malaise, fatigue followed by low-grade fever -- i.e. "chronic fatigue syndrome" (CFS). While there are many cases developing from one`s twenties to one`s forties, in the prime of life, the exact cause is unknown and there is no simple treatment. Diagnosis is difficult and the symptoms are similar to depression. There are also doctors who do not know or will not acknowledge the disease, and patients get passed around by general practitioners and psychiatrists. (Akiko Hosokawa)

Something happened inside the body of a woman (40) in Tokyo in March of 2009. She broke out in a fever of 39 degrees and hence took anti-fever medication, but a low-grade fever continued to last for more than a week. She fell into a brain fog and could not understand the content of conversations while the slightest of movements left her breathless. Gradually, general muscle strength became so weak, she was not even able to grasp the pots on the stove. She was treated, but there was no alleviation of symptoms, and she was diagnosed with CFS six months later.

She is a single mother, with a daughter (12) in junior high school and a son (10) in elementary school. Since August of 2010 she has been on leave from work but the low-grade fever and headache still continue. She is almost completely bedridden and gets around in an electric wheelchair. Her children prepare her meals and take care of her. She says she feels a little better when taking Chinese medicine and or when receiving a massage to increase blood circulation. "Since I am able to move around as I would like, I think I will be leaving my children with some bitter memories."

"Many CFS patients are in their twenties to forties with a good percentage of these being women," points out CFS leading authority Kansai University of Welfare Sciences Professor KURATSUNE Akihiko. He guesstimates there are over three hundred thousand patients in Japan.CFS is distinguished by a sense of languor and weakness, followed by a low-grade fever, and muscle and joint pain. While diagnostic criteria is based on such things as this continuing for more than six months and disrupting daily life, a number of doctors also base it on the patient having swollen lymph nodes. In some cases, when a general examination finds no abnormalities it is suspected the patient is feigning the illness. One women with a sudden worsening of symptoms ran to the local clinic and when she mentioned CFS she was told that "CFS can not be diagnosed or treated."Many patients also complain of symptoms besides the physical symptoms, such as insomnia and a reduction in concentration and the ability to think. INOUE Michichika of the "Ikebukuro Clinic" in Ikebukuro, Tokyo states, "It is difficult to distinguish between depression, and often patients wander from hospital to hospital." Since the symptoms overlap between psychiatry and internal medicine, it is important to have the cooperation of both here.While it is not clear what causes the onset of symptoms, when patients' blood is examined, there are cases where some sort of virus is found and KURATSUNE points out that there must be some connection with the immune system.

One distinguishing factor found in patients' blood is a higher than normal presence of reactive oxygen species and sometimes medicines are prescribed which lowers the amount of these.

However, at present, there are only specific treatments available to alleviate each symptom. And while some patients return to a normal everyday life, there are others who suffer for more than ten years without an alleviation of symptoms.A study group with the Ministry of Health, Labour and Welfare, in which KURATSUNE is participating, is making advances in diagnostic criteria like checking the pulse from the fingertip to determine autonomic system balance. Kuratsune states "If you feel tired, take a rest, and if that does not help, then see a specialist."◆ Outside the Scope of Welfare Services

Some CFS patients whose symptoms become severe end up bedridden and require assistance to eat and to go out. However, if their symptoms are not constant, then it is difficult for them to get disability benefits.

In the Comprehensive Welfare Act for Persons with Disabilities set to take effect in April, patients with intractable diseases who do not have a disability will also be able to receive welfare services such as aid payment and housework assistance. However, CFS is excluded.Dr. SHIN Isu of the Sekimachi Medical Clinic in Nerima-ku, Tokyo, points out that "The word 'Fatigue' in the disease name does not reflect the actual conditions. It invites misunderstanding and this is one factor as to why these people cannot receive social security benefits."It is said that some doctors in Canada and the United Kingdom advocate a name change to "Myalgic Encephalomyelitis" because there are such things as inflammation of the brain, etc. in critically ill patients. Dr. Shin also agrees with a name change. He states, "I would like for the critically ill to be able to receive welfare services on a priority basis."

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About me:I'm a 25-year veteran of CFIDS. I know what it is like to be bedbound for long stretches of time. I also know what it is like to recover, and to relapse. But this blog is not about my personal experience. It is intended to be a resource - a collection of anything that might be helpful to the CFIDS community: book reviews, advice, CFIDS news, research, advocacy, opinion, who's who in our community, fundraising... and occasionally a bit of humor.

Disclaimer: I am not a doctor, which means nothing I write, no matter how sensible it may be, should be interpreted as medical advice.